UK: NICE Longcovid guideline 2020

Am I given to understand that as it's a "living guideline" of some kind and being done in a different way to other guidelines, it will never be "published"?

 

The Long Covid guideline was developed using the "Rapid Guideline" process:

https://www.nice.org.uk/guidance/ng188

COVID-19 rapid guideline: managing the long-term effects of COVID-19
NICE guideline [NG188]Published: 18 December 2020

(...)

Guideline development process
We are using a ‘living’ approach for the guideline, which means that targeted areas will be continuously reviewed and updated in response to emerging evidence.

We developed this guideline using the interim process and methods for guidelines developed in response to health and social care emergencies.

 

Honestly, the "living guideline" thing seems mostly to be about "don't hold us accountable for anything in there, it could change at any moment". Sounds like the perfect excuse to eat their cake and have it too. But since it's all done in secret who the hell knows?

 

That's right. There is no accountability that I can tell. Long covid patients are also not being protected from anything people want to do to them.

Edit: a proportion of them (with PEM, 6 months+) are also not being told that they likely have ME/CFS and believe it's a different condition so they won't be able to benefit from changes in the new guideline

 

COVID-19 rapid guideline: Managing the long-term effects of COVID-19
List of expert advisory panel members and declarations of interest:

https://www.nice.org.uk/guidance/ng188/documents/register-of-interests


Stakeholder list:

https://www.nice.org.uk/guidance/ng188/documents/stakeholder-list


Summary of consultation comments and responses for COVID-19 guideline scope: management of the long-term effects of COVID-19:

https://www.nice.org.uk/guidance/ng188/documents/consultation-comments-and-responses-4


Management of the long-term effects of COVID-19 Targeted peer consultation on draft scope Comments table 23/10/2020-27/10/2020:

https://www.nice.org.uk/guidance/ng188/documents/consultation-comments-and-responses


Managing the long-term effects of COVID-19
Targeted consultation on draft guideline Comments table 26/11/2020-01/12/2020:

https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation


Summary of consultation comments and responses for the COVID-19 guideline: managing the long-term effects of COVID-19

https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation-2

 

Would you please guide me to this "Stakeholder list"?

 

https://www.s4me.info/threads/uk-nice-longcovid-guideline-2020.17338/page-2#post-375639

The Stakeholder List is the second link from the top of my post.

My point being, that the development process for this Rapid Guideline did have Stakeholders, Consultations and Consultation Reponses.

 

Email from NICE.


Dear Stakeholders,

RE: NICE/SIGN/RCGP COVID-19 rapid guideline: ‘NG188 - Managing the long-term effects of COVID-19’ (update)

The final updated guideline has now been published on the NICE and MAGICApp websites:


https://www.nice.org.uk/guidance/ng188

https://app.magicapp.org/#/guideline/5786


You can view the comments that we received during consultation here: (https://www.nice.org.uk/guidance/ng...documents/consultation-comments-and-responses). These were invaluable in helping us to develop and refine the updated guideline and we are grateful for your feedback. You can also find a thematic summary with our responses here: (https://www.nice.org.uk/guidance/ng...cuments/consultation-comments-and-responses-2)


We would like to thank you for your help and interest in developing this important piece of work and any support you can give to promote its use in practice. We plan to update this guideline regularly to reflect the latest evidence and information.

 

I have been reading this. Is anyone more familiar with the changes recap what has happened (I can't figure it out sorry)? I noticed PEM still not in symptoms. Has anything changed for the better?

 

The impression is that the Long Covid guideline tries to avoid acknowledging any similarity to ME/CFS, despite physical activity being listed as the most common cause of relapse.

I have doubts that this will work out well for them. One thing it could do is make ME/CFS the diagnosis that many LC patients feel is the more accurate one.

I think the stigma that thy're trying to distance themselves from comes from attitudes within medicine and broader society towards "medically unexplained symptoms", and not from anything intrinsic to ME/CFS. And also bad research being tolerated. The problems simply goes deeper than superficial labels and so nothing is solved by avoiding mentioning ME/CFS and PEM.

To address the stigma they need to fight against the common prejudices, such as the idea that lack of objective diagnostic test means the illness has a psychosocial cause.

 

Is there going to be another "update" to this guideline and if so, when? Is the issue here in the composition of whoever is dealing with it? Many of the patient group stakeholders in the comments echo eachother and appear to be being ignored.

 

Is there any hope of this? The process seems to have been very easy for whoever this is to control. It's quite worrying. I don't see any protection for long covid patients. It's like watching them trying to set up ME/CFS clinics all over again.

 

Public Health England stakeholder comment:
"there is a real risk that broad communication about the likelihood / symptoms / severity of the condition will increase attribution of symptoms to Long COVID (even if these are unrelated)", will increase negative expectations about Long COVID, and will potentially have an adverse impact on health outcomes. Any broader public information should therefore focus on raising awareness of the support available, rather than the severity / impact of the condition. It would be useful to update the recommendation to reflect this. [PHE Behavioural Insights team comment]" p35

Edit to add PHE comment on p2 (my emphasis):
"Why is the long list of symptoms still included? It would be helpful to refine the list of symptoms – the list at the moment is so long, and so broad, it is only likely to encourage people to attribute any symptoms they are experiencing to Long COVID, it is not likely to be helpful to identify whether people are actually experiencing Long COVID. [advice from PHE Behavioural Insights Team]"

I have been reading the comments and those of PHE are particularly bleak. Quite disturbing reading.

I thought I should include this, on the case def, from PHE as well (p133) which I found shocking:

"From PHE our main comment on this guidance, as in the last round of consultation, remains that the proposed case definition still does not mandate any proof of infection (including antibody testing), and there is no sub classification within the very wide definition, hence interpretability and analysis is going to be incredibly difficult. This creates “noise” in the system and anxiety for all those who self-identify with “long covid”. There are a number of different syndromes and until there is some sub-categorisation of these groups research into treatment and outcomes will be difficult to progress as will optimising management and long term support. P8 for the case definition of post COVID 19 syndrome: It would be helpful to acknowledge that people may have symptoms for reasons that are not post covid syndrome and not due to an “alternative diagnosis” as stated in the definition. People may feel unwell after a prolonged stay in hospital/ITU and it may be worth mentioning this specifically or changing the wording of the definition to incorporate this. e.g. “are not explained by an alternative diagnosis or pathology”. Furthermore, evidence suggesting some of the common symptoms listed could be due to the effect of lockdown/being in a pandemic but this is not mentioned anywhere in the guidance (this has been highlighted in studies which include controls). We remain concerned that the case definition still does not mandate any proof of infection including antibody testing, and there is no subclassification within the very wide definition, interpretability and analysis is going to be incredibly difficult."

 

The panel however agreed that clinical judgment would be needed for exercise tolerance tests because it could be harmful to some people (for example, people with chest pain or severe fatigue).

Great, looking forward to hearing what expert makes that judgement, and how.

Meanwhile, expert witness Gp Capt Edward Nicol QHS gave some not-surprising insight into military opinions on rehab, ironic that this guideline was released on remembrance day yet puts the troops in the hands of people holding archaic views not represented in the guidelines for clinical excellence.

• There is no specific recommendation for graded exercise, but exercise is encouraged and advice is tailored to patient needs.
• Cardio-pulmonary exercise testing has proven an excellent discriminator to identify those at risk of “hard” pathology. Meeting age predicted maximal exertion (which could be assessed at scale with Bruce Exercise ECG, or ramp bike protocols) excludes underlying pathology with high sensitivity and specificity.
• The provision of care has evolved into a more traditional post-viral rehabilitation model, with the physician-led service scaling back significantly, given the low prevalence of “hard” pathology found.
• Cardio-pulmonary exercise testing has proven an excellent discriminator to identify those at risk of “hard” pathology.

FORM_Expert_testimony_-_Edward_Nicol_v2_FINAL_r393363.pdf (magicapp.org)...

EDIT: this is how NICE want people to determine whether a sit to stand is safe for patients with e.e. severe fatigue

• The panel discussed that appropriate protocols could be found in these studies: Ozalevli S, Ozden A, and Akkoclu A (2007) Comparison of the sit-to-stand test with 6 min walk test in patients with chronic obstructive pulmonary disease and Briand J, Behal H, Chenivesse C et al. (2018) The 1-minute sit-to-stand test to detect exercise-induced oxygen desaturation in patients with interstitial lung disease. The panel could not recommend any one in particular as their effectiveness is undetermined.

 

I have had ME for 26 years and had COVID last year. I have been referred to a COVID clinic and had a triage appointment with a physiotherapist last week. I have an appointment with a consultant in May 2022. (All appointments have been by phone except for a chest X ray and blood tests). I will be getting a place on an online fatigue management course. In the meantime I have received a booklet through the post, and a couple of documents. The booklet is very good. A document with advice on conserving energy is very good (I already follow the recommendations, having learnt through experience). I have concerns about some of the wording in one of the documents.

 

Hi @Yvonne I am sorry to hear you had COVID last year; I hope you can improve. Thank-you for the information about your experience. What are the concerns about the documents? What does the advice on conserving energy consist in? I have been quite interested in what they are telling people and whether anything has been learned from those with ME. I myself had covid and did not recover but have not gone through this process.